In 2020 I was officially diagnosed as autistic and many of my closest family and friends were skeptical due to misconceptions about ASD.
When you think of the word autism, what comes to mind? Likely, you think about a boy with an intense interest in trains or numbers and an obvious lack of social skills. You may even picture a child rocking back and forth or acting strangely in public. While these behaviors can occur in autistic children, they do not accurately represent autism as a whole; they are stereotypes rooted in misunderstanding and outdated research. Read on to learn more!
While autism is a familiar word, very few people are able to explain it. So what exactly is autism? Autism Spectrum Disorder (ASD, or autism for short) is a genetic variation which causes the brain to be wired differently; this is called neurodivergent, whereas a typical brain is called neurotypical. This unique neural wiring allows autistic people to experience the world in a unique way.
Many people see autism as a tragedy, but there are actually many strengths that are not typically mentioned when discussing ASD. I will go into more detail on those, but first let me clarify some important facts.
Facts and Myths
There are a lot of misconceptions out there about autism on the internet, in parent groups, and even in doctor's and psychologist's offices. Much of what we know about ASD has been discovered through more recent research, so many people and professionals are unwittingly spreading false, outdated information. This is so harmful! I have heard one too many stories of fellow autistic people being stereotyped and refused diagnosis by a professional diagnostician because that professional was misinformed. It is time for change! Here are some facts and common misconceptions:
- Autism is not caused by vaccines; genetic markers have been found which show it is inherited. If you talk to enough autistic people, you will find they have at least one other person in the family who is diagnosed or who is suspected to be autistic. This is not a coincidence; it is genetics.
- Everyone is NOT a little autistic. This is a commonly spread misconception and is not based in scientific research. You are either autistic or you're not.
- Being autistic does not cause a person to lack empathy. Empathy is actually a learned skill that no one is born with, and some people (both autistic and non-autistic) struggle with this if they were not taught to practice it as a child.
- It is common for many autistic people to struggle with the processing and expression of emotions, but this does not mean they are devoid of a rich inner emotional world.
- Autism does not go away with age, and cannot be cured (nor should it be).
- Not all autistic people struggle with eye contact. On the contrary, some actually make excessive eye contact.
- ASD is the most current and accurate label used in diagnosis of autism; Asperger's is now an outdated term that is being phased out by professionals.
- Autism does not look a certain way. Down's Syndrome (which often causes a rounded face and more distinctive facial features) is not the same as ASD.
- Autism is not an intellectual disability (ID) and many autistic people are above average intelligence. There are many autistic people (like me) that have no intellectual impairments, but there are also many autistic people who do have an ID. Never assume!
- Autism Spectrum Disorder is a misleading term because it seems to imply that autism is on a linear spectrum of being "less autistic" or "more autistic". This could not be further from the truth! Let me explain...
The Spectrum Is Not Linear
When I tell people I'm autistic, they usually react by saying "you must have mild autism" because it is not outwardly noticeable to them that I'm any different. They mean it as a compliment, however it is totally inaccurate and ill-informed. This is because "mild autism" does not exist; nor does "spicy". Say what?
Yes - The autistic spectrum is actually more like a color wheel of different abilities than a line; each individual autistic person may struggle more or less in each ability since no two people are alike, but this does not make them "more" or "less" autistic. Some varying abilities of the spectrum include noise tolerance, multitasking ability, organizational ability, time management, verbal ability, energy levels, food restrictions, etc. All of these factors can be influenced by other diagnoses such as OCD, ADD, and depression which are all very common in the autistic population. Every autistic person is unique- just as all people are- and cannot be charted on a line.
There is no such thing as being "more" or "less" autistic, "high" and "low" functioning autistic, or "mildly" autistic. The thing about an invisible disorder is that you may not be able to see anything happening from an outside perspective, but a person should not be labeled based on your outside perspective. For example, I appear to function like anyone else externally because I have improved upon my strengths over time and have grown, but internally it takes me significantly more energy and effort to do this than it would for a neurotypical person. Thus, I am no more or less autistic than any other autistic person who hasn't been able to improve their external functioning as much as I have. Internally, I still struggle with many of the same things, even if it doesn't show on the outside.
Autism Does Not Need A Cure
Currently, the Autism Speaks organization is conducting research studies on genetics with the hope of finding a "cure" for autism. Their MSSNG project is dedicated to sequencing genomes in order to "advance personalized treatments for autism by deepening our understanding of the condition’s many subtypes." Organizations like these consider autism a "risk" and seek to "cure" it with harmful treatments. Sadly, many people view autism as a tragedy and are quick to support this type of research.
Groups like Autism Speaks are not acceptable to the majority of the autistic community due to this mode of thinking. Rather than focusing on a world which better supports autistic people, the focus has become genetic elimination of autism. This would be like if researchers saw that everyone in your family had a very high genetic likelihood of red hair, then attempted to wipe out or alter your family's DNA to prevent red hair from spreading throughout generations. That wouldn't make any sense, and neither does trying to wipe out autistic people.
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Not only does this way of thinking send a harmful message to the autistic community - It also doesn't make any logical sense. Autism is not a disease like cancer; it cannot be cured and no one dies from it. It is a genetic variation which contributes to humanity's survival! Saying autism needs to be eradicated is labeling autistic people as defective which is unethical and misinformed. Christopher Whelan, an autistic registered social worker, explains it this way:
"Autism is largely influenced by and passed down through genetics, like hair colour and body shape. This suggests that autism has been a critical piece of the human experience, rather than a new phenomenon, and to target a segment of the population for extermination based on genetics is the linguistic root of genocide."
In other words, if all people on earth thought the same way and reacted the same way to the environment then we wouldn't have so many wonderful inventions and innovations; there is a reason why autism is so common and continues to prevail in our genetics! It has even been speculated that some of the greatest geniuses that walked this planet, such as Albert Einstein and Nikola Tesla, were autistic. Some modern day examples of confirmed autistics are political activist Greta Thunberg and journalist Marianne Eloise. Jim Sinclair, an autism-rights movement activist, poetically phrases it this way in Don't Mourn for Us:
"Autism is a way of being. It is not possible to separate the person from the autism. Therefore, when parents say, I wish my child did not have autism, what they're really saying is, I wish the autistic child I have did not exist, and I had a different (non-autistic) child instead. Read that again. This is what we hear when you mourn over our existence. This is what we hear when you pray for a cure. This is what we know, when you tell us of your fondest hopes and dreams for us: that your greatest wish is that one day we will cease to be, and strangers you can love will move in behind our faces."
You may have been surprised to hear that one of the largest autism organizations is supporting research to eliminate autistic people! You may have even donated or supported Autism Speaks in the past, not realizing the harm being done. So what now?
Well first of all, I am very glad you are here to learn. While Autism Speaks does provide some resources that help a handful of autistic people, their ultimate values and principles are unethical.
When deciding whether or not to trust an autism organization, you should always check who manages it and where the funds go. For example, Autism Speaks is not managed by autistic people; only 1 out of 30 people on the board of directors is autistic. As for funding, only about 1% goes to help the autistic community and a whopping 25% is allocated to research, which includes their harmful genetic sequencing projects. Trusting Autism Speaks is like paying for a surgical procedure and instead of getting a surgeon, you get someone who has read all about surgery but has never actually performed it before! Why in the world would you trust them?
One of the best ways to support the autistic community is to support organizations that are actually run by autistic people! One of the largest is the Autistic Self Advocacy Network (ASAN), which has a wealth of information and articles for you to explore and is also a great place to donate. This is a wonderful alternative to Autism Speaks and is managed entirely by the autistic community.
To sum it all up: If an organization is not run primarily by autistic people, then it is safe to say the best interests of the autistic community are not the primary goal of the organization and you should look elsewhere for a more trustworthy one.
Sadly, the issues autistic children must face are often exacerbated by misguided therapy methods. One of the most popular treatments for autistic children is Applied Behavioral Analysis (ABA) therapy. Despite efforts to update the methods used to make it a more positive experience, ABA therapy is considered harmful and abusive to autistic children and is still used today.
So what is ABA therapy? It aims to correct autistic behaviors with a reward/punishment system. Essentially, it teaches kids how to mask their autistic behaviors which is detrimental to their mental and emotional development; those who have been in ABA are 86% more likely to develop PTSD than peers who have not been in ABA.
Some ABA methods recommend 40 hours per week from children between 2 and 5 years old. If you've ever spent more than 30 minutes with a child that young, you know their attention span is not nearly developed enough to put in a 40 hour week! This alone is insane.
You may be wondering why this type of therapy still exists if it is so harmful. The issue is that on a surface level it appears to be a positive way to get autistic children to behave and to learn valuable life skills. However, it actually teaches autistic children that their feelings are not important or relevant; it addresses their behaviors without taking into consideration their needs. Watch the first minute of the video below and I will elaborate on this.
Nothing seems abusive about this video, right? The two children in the first section are not being disciplined, yelled at, or physically harmed. However, you will notice that the therapist is constantly taking the girl's hands and putting them back into her lap. Many autistic people are soothed by harmless physical movements (known as stimming), and these movements are a way for children to regulate themselves and their feelings. The therapist is training the girl to suppress her natural movements which is placing higher importance on making her appear "normal" rather than honoring the child's feelings. Later on in the video, the same girl begins rubbing her eyes and is clearly exhausted from the exercises, but her feelings are disregarded so the session can continue. If I was that age clocking 40 hour weeks, I'd be tired too!
This merely scratches the surface of the harmful nature of ABA therapy. If you are a parent of an autistic child, please do not place your trust in people just because they are professionals and seem to be informed. Ultimately, we are all human and even the most researched and intelligent people can make mistakes. ABA is one of those (massive) mistakes which history will look back on like it does the lobotomy. Seek out people from the autistic community; seek out autistic adults who have been through the therapy and ask them for guidance. I guarantee you they will not advocate for ABA.
Autistic Children Become Autistic Adults
The most common conversation surrounding autism is about children. It make sense because many parents are trying to figure out how to raise their autistic children, schools are trying to make proper accommodations, and more research is available on children with ASD.
So what happens when those children grow up? Can they "grow out of their autism"? Absolutely not. As I mentioned before, ASD is a difference in the way the brain is wired. This wiring is consistent throughout the lifetime, so autistic children become autistic adults in every case. You may be wondering why people seem "less autistic" as they grow older, and this is because autistic people learn and grow just as anyone else; they learn better coping skills, how to manage stress, how to regulate their emotions and behavior more effectively, and often how to hide things that are unusual about themselves. This is called masking, which I will unpack below.
What Is Masking?
Masking is similar to acting or copying and can be learned as young as three or four years old according to research. It is basically where an autistic person tries to copy the behaviors of the people around them in order to blend in and cover up autistic traits. This can range from facial expressions, body language, tone of voice, conversational responses, social habits, and more.
It is very common for autistic people to practice conversations in the mirror, memorize generic responses to questions, and practice facial expressions so that they are prepared to mask in everyday situations. Masking takes a lot of mental energy, and is often the reason why many autistic people are easily exhausted by socializing. Excessive masking is not a healthy coping mechanism and can be detrimental to a child's development or an adult's mental health if they are actively trying to be someone else.
Paige Layle is a young autistic TikTok creator who talks more about masking and the female experience of ASD diagnosis. Please watch her informative video below - it's super interesting!
Paige Layle on Autism
All the way back in 1977, a study found that autism is caused by genetics, but the word "autism" was coined much earlier in the 40s. Nearly all of the earliest studies were exclusively on boys; girls have not been studied extensively until the past twenty years or so (which is not very long in the scientific community).
Studies on female autism are still being conducted today, and researchers are finding that ASD can look very different in females. This has caused a lot of women to go undiagnosed for years because the criteria for diagnosis is based on males. Many diagnosticians are still using this outdated criteria to diagnose autism.
In general, autistic boys are more likely to externalize their struggles, which is more noticeable to others and is much easier to diagnose. Autistic girls, however, are more likely to internalize by masking, holding in the urge to act out, and the like. This adds another layer of difficulty for diagnosing girls and can also be the cause for other issues such as depression and anxiety.
I found out I was autistic when I was 28, but I know of people who were recently diagnosed in their sixties! There is also a shortage of research on autistic adults, but that is steadily changing.
Interestingly, a 2020 study by researchers at The University of Texas at Dallas debunked the idea that autistic people are less capable at social communication. They observed autistic people talking to non-autistic people, then both groups talking amongst their own group. What they found is that social ability depends on who you're talking to! Autistic people are not worse at social interaction; they are just better communicators when talking to other autistic people. Similarly, non-autistic people are better communicators when talking to other non-autistic people (and worse when talking with autistic people).
This means that each group has their own communication style and that neither is superior to the other. Hopefully more studies like this are able to spread awareness so everyone understands that autistic people are just as socially capable as non-autistic people.
Infinity Symbol vs. Puzzle Piece
The vast majority of autistic people prefer the infinity symbol over the puzzle piece. So why does this matter? First, let's jump into the history of the symbol, as explained by writer Cassandra Crosman:
"The origin of the puzzle piece symbol for autism came from the United Kingdom organization, the National Autistic Society in 1963. It was created by Gerald Gasson, a board member for the National Autistic Society. He and the rest of the board believed that autistic people suffered from a “puzzling” condition, so they adopted a logo of a puzzle piece with a weeping child, displaying the notion that autism is a tragedy that children suffer from. This visualization of autism has led to decades of autistic people receiving unwanted treatments and therapies to treat a disease that they don’t have."
Since then, the puzzle piece logo has been altered into a ribbon or other variations, and new meanings have been coined in an attempt to disregard the original one. However the puzzle piece logo is outdated, offensive, and still echoes the original meaning that autism is a "tragedy," which couldn't be further from the truth.
Personally, I never liked the puzzle piece even before I knew I was autistic. It has always reminded me of a kindergarten puzzle game, and the aesthetic itself is kiddish and tacky. It also perpetuates the false idea that autism is only relevant to children, and thus does not suitably represent the adult autistic community. Crosman eloquently summarizes it:
"Autistic people reject the puzzle piece symbol for multiple reasons, but the main reasons are that it is infantilizing, it promotes the mentality that autistic people are incomplete or are missing puzzle pieces, and it treats autism as a disease that needs to be 'treated' or 'cured.' "
In order to represent ASD in a more positive and inclusive way, the infinity sign has been popularized by the autistic community as the symbol of choice. This is another way to show that autism is not linear; there is no beginning or end. It is often seen in the color gold (which is Au on the periodic table, a nice abbreviation for Autistic). It is also common to see rainbow infinity symbols, which represent the diversity of ASD and the broader neurodiversity movement.
Medical diagnoses are inherently negative; they are based on the limitations of a person in comparison to the general population, and do not factor in the strengths that come with being neurodivergent. For example in order to be diagnosed with ASD, you have to exhibit very specific types of dysfunction, dysregulation, and disability in accordance with the criteria laid out in the DSM-5 (Diagnostic and Statistical Manual of Mental Disorders), or similar manuals if diagnosed outside of America.
However, nothing in life is all good or all bad! Fortunately, society is starting to take notice of unique autistic strengths such as keen attention to detail and exceptional pattern recognition, which are indispensable skills in career fields such as technology and medicine. Indeed, many businesses are part of programs that seek to hire from the neurodivergent community because they recognize these unique strengths. It is important to note that these strengths are not necessarily exclusive to autism, but that they occur more frequently in autistic people than in the general neurotypical population. Here are some crucial strengths of ASD, and also some of the difficulties that come with them:
Sensory Awareness: Due to the way the brain is wired, autistic people can take in very large amounts of information at once. This can be a blessing or a burden depending on the situation, and most people only see the burden: Sensory overload is when the brain becomes overwhelmed by input from smell, taste, touch, sight, hearing, and proprioception, and the autistic brain is prone to this when in busy environments because it is hyperaware of every detail. In my experience, lots of light or noise can be enough to give me a migraine! It is also difficult to focus on one conversation when in a noisy room, because my brain is trying to listen to all of them at once.
But the flip side of this hyperawareness is the blessing: I am constantly noticing details around me that other people don't (or can't) notice. I hear very faint sounds, and smell faint smells; it is common for autistic people to be able to hear the buzzing of outlets and other electronics, or to smell scents that are too faint for neurotypical people to pick up on. Autistic people notice things. We are often the person in a meeting that thinks up an idea no one else has, or the one who sees things in a completely new way. This is an invaluable skill, whether it be for finding errors in an architectural blueprint, smelling a faint gas leak, inventing a device to solve a problem, or pointing out a fallacy in a workplace plan. It can be challenging when the brain doesn't filter as much info, but the results are fabulous when applied for specific purposes.
Creativity: When you think differently than most people, there are a lot of opportunities for creativity because you are constantly finding new and inventive ways to do the same old things. Personally, I have a BFA in Fine Art and I love playing guitar, writing poems, singing, and solving problems. These skills I have developed are directly related with how my brain functions, and my brain functions the way it does because I'm autistic. The downside to this is when creativity meets a disregard or disdain to social norms; creativity can be offensive!
Intense Ability to Focus: This is a skill which is valuable for fields like research and data analysis. Autistic people have a great deal of brain power, and this works to our advantage when we hone in on something important to us. A fitting example is how I have been sitting here, researching and writing away at this article nonstop for six hours straight! The downside to this strength, however, is a difficulty stopping and starting tasks. For example, if someone were to walk up to me and ask me to do a task while I was in the middle of writing and thinking in-depth, I would have trouble pulling myself away from my thoughts and switching my focus. This is related to executive dysfunction (which is commonly related to ADD/ADHD/ASD) and can impact time perception and organizational abilities.
Special Interests: Most autistic people use their focus to learn about their interests in extreme or intense depth. Where the average person may know a handful of facts about an interest such as anatomy, an autistic person might not stop until they know nearly everything there is to learn. Special interests are often thought of as intellectual subjects such as math, history, or science, but they can also be about shows, music, collectible items, and pretty much any topic in the world you can think of. The common theme is the depth with which autistic people approach their interests. One of my interests is autism! Can you tell?
Memory: One common autistic experience is remembering details for a very long time. Some people can recall memories from as young as one or two! This can come in handy when other people's memories fail them; In my life, I tend to remember the small details that others don't usually take notice to, and I can recall a lot of things from fifteen years ago. The downside to this strength is time perception; the more I remember about the past, the closer it seems to the present moment. So I can think about someone I knew ten years ago, and reach out to them as if I had just talked to them yesterday because that is how it feels to me. This can make for some awkward interactions! Another issue with time perception is keeping track of daily, weekly, and monthly time. If time seems closer together, then it is easy to lose track of it! Without my calendar- full of reminders, deadlines, and events- I would not be able to function very well.
High Logical Cognitive Ability: Autistic people have brains that are wired for logic. If your brain is unable to filter out all the sensory input it needs to, then you inevitably learn to plan ahead in order to avoid sensory overload. Planning ahead requires thinking about the future and anticipating what might happen, which requires a significant amount of brain power to do and is not a typically a developed skill for the general population. It makes sense why autistic people tend to gravitate to more logic-based thinking as their initial reaction, rather than emotion-based thinking. The biggest downside to this is probably having a huge ability to overwhelm others with too much information or ideas all at once.
This is by no means an exhaustive list, but rather common strengths that I have found by talking with and learning from many other autistic people. It is important to remember that every autistic person is different, so not all autistic people have every one of these strengths; this section is to show that autism is more than a black-and-white checklist of diagnosable issues.
The Language of Autism
There are two types of ways to refer to autistic people, sometimes lovingly referred to as iffle and piffle. Let me explain!
Identity-First Language (IFL): IFL uses phrases like you are autistic, I am autistic, she is an autistic person, I was diagnosed as autistic, etc. This type of language implies that a person is not separate from autism; it is part of who they are (their identity). This is the most respected option which is supported by the majority of the autistic community.
Person-First Language (PFL): PFL uses phrases like you have autism, I have autism, she is a person with autism, I was diagnosed with autism, etc. This was originally invented in the 80s by advocacy groups who wanted to replace offensive language (crippled, challenged, etc.) and is still the most common language used in the professional world and beyond, despite the autistic community's opposition. Though well-meaning, this type of language implies that autism is something separate from the person, like an accessory you carry around and can get rid of at any time; something that is carried rather than an integrated part of who someone is. It is like saying, "I have cancer," where the cancer is something that can be eliminated. In contrast, autistic people are born autistic and it is not something to be eliminated.
Personally, I prefer IFL. I say I am autistic, and I prefer others to refer to me this way as well. When I hear someone say "you have autism," my natural reaction is to cringe because it makes me feel as if that person knows very little about what ASD is and who I am.
So which should you use? Well, my rule of thumb is based on this: I know many autistic people who are offended by PFL "have autism" language, but I don't know anyone who is offended by IFL "autistic" language. So I will always use IFL unless an individual prefers to be addressed otherwise; it is the safer bet. Many non-autistic people (usually in the professional world) will insist on PFL "have autism" language because it is considered politically correct, but it makes more sense to label autistic people based on their own preferences.
Conclusion and Resources
If you made it here to the end, thanks for reading! I hope you learned a lot and will pass on some of this knowledge to others so we can start to change the stigma surrounding autism. I also hope you will see autistic people differently, and in a more positive light than society teaches us.